Life List #2 Record an EP and Video of my Songs about my Cancer Journey


I know you are a caring person wanting to make a difference like me, or you wouldn’t be reading this blog. I’m looking for advice and assistance on this project and I want to gift the results to the Cancer Society so that many people can benefit from it.

Music is a great healer and I used it as one of the tools that helped me and continues to help me through my journey. When I first was told “You Have Cancer” and got past the initial shock, I watched shows like The Voice and saw the stories of people who had turned horrific times in their lives to good purpose, wondering what did it take for me to do something positive and values driven.

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Where we leave our clothes when we go in for radiation treatment

I decided I wanted to do something too, which started with setting up the Facebook page Musicians with Cancer and other Maladies, I also wanted to try to do something really positive for other cancer patients and their families and friends.

 

So my Life List goal #2 is to complete an EP and music videos to help tell the story of my journey in terms of a cancer patient that may help other people relate to this horrible illness.

It’s 24/7, it’s scary and in many cases results in anguish, fear, depression, pain and death. The story isn’t unique, it applies to other conditions too like dementia.

Last night I watched the movie ‘Glen Campbell I’ll Be Me’ on TV and had tears in my eyes throughout the whole movie and my heart goes out to people suffering from dementia, which our family is also dealing with.

One of my songs for the EP is called “Who Stole My Words” which was about an experience I wrote about recently about falling out of an ocean kayak and due to my condition wasn’t able to come up with simple words like current and tide after I swam it to shore, not having the strength to get back in because I am not producing cortisol (i.e. no adrenalin). For a wordsmith, not being able to recall simple words is pretty scary.

So my challenge is that I need to fund this work and then make it available at no cost to people who are going through the same experience, because even with insurance, having cancer is very expensive and many people have to sell their homes or spend their life saving to help pay for their treatment or even to travel for treatment if they don’t live in a town where it is available. We had to spend a 5 figure sum to top up the gap for my treatment to date, so I know what it’s like. So I’d like to gift the album / video to the Cancer Society when it is complete.

I’m going to need additional musicians, possibly a backing choir for one of the songs, a videographer, editor and more people to help me. I’m going to need a studio, a sound engineer, a cast of several people and then there’s production and distribution. It’s pretty scary.

I’m keen for advice and help. First of all, where do I go for money? I’m thinking about whether to use New Zealand’s ‘Give a Little’ service. To raise funds because this is a charitable exercise. The finished product will be gifted to the Cancer Society and anyone who can benefit from it for free. There won’t be any profits.

Then I need a bit of a team to help me make this happen. Can you help with advice, or would you like to join the team? I can write the songs and I want to perform them with various artists, but that’s about the limit of my expertise.

So will you help? I need people and I need advice. You can contact me via Twitter Facebook by joining the group Musicians with Cancer and other Maladies, LinkedIn or Email.

 

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A Cancer Meltdown


So a couple of weeks ago I felt like things were going OK. I had my cool car and whilst I was feeling really fatigued, I was coping. Then a pile of little things got the better of me. I was late with my tax (which I hate doing, because I normally do that at the end of the calendar year, when I was doing 8 weeks of radiation therapy and was too tired any other time. I’m between test results, so anxious about what the next result will be. My arm is really sore after taking the splint off my wrist from a thumb strain (which impacts on everything from using a mouse to playing guitar. Super busy at work and a number of other things, nothing that would be beyond the norm for any of us in isolation.

20160503_161554.jpgI had words with my wife, something that is very rare and after she left the music room, I lost the plot. I picked up my office chair and flung it at the floor breaking the base and ripping the carpet.

This was not good for our relationship and the following night I was away on business, which was probably s good thing to allow us to both cool down. It was totally on me and something I haven’t done since I was a teenager. I do not have an anger problem, it’s just one of the many emotions that you go through with grief and with cancer. Some people cry a lot (I only get emotional like that when giving speeches at weddings or when I’m watching an awesome concert). I might get slightly bloodshot in the eye when I’m passionate about something, but again that is when I’m happy.

So the following night I found myself in a hotel in Wellington after a 4:20AM start and a long working day. I sat in my hotel room looking out the window and pondering the meaning of life from about 5-7:00, went to bed. No dinner, no TV, a few SMS’s with my wife and slept for about 11 hours.

Bottom line, I really needed to let off steam. But I wasn’t finished and this is the good part. Right through summer when I usually write and play a lot of music, play a few gigs,  I couldn’t play, I had lost my mojo. Well after this exercise I got it back and over the last couple of weeks have written the backbone of a new song, which was the catharsis I needed.

Here’s what I’ve got  so far. It’s a country song, I really like country as a genre for telling stories. I hope to fine tune it enough over the next few week to start recording it, because I like the song as a song, not just a form of letting off steam.

If I Could Turn The Tables

Verse 1

If I could turn the tables I’d un-throw the chair that I just smashed

I’d un-rip the carpet that it tore when it flew down and crashed

Sometimes I feel that I can take no more, sometimes I derail from my track

I’ve got to get this cancer in control and find my way back.

Verse 2

If I could turn the tables I’d unsay the words that I just said

I’d turn down the volume of the voices that keep crashing through my head

Sometimes I feel like I’m OK, then the doubts start to shiver down my back

I’ve got to climb out of this hole and find my way back.

Chorus

Positivity is the frame of mind I ought to be in all the time

Everyone is nice and they want to give advice

Of a treatment they’ve heard of on the vine

Verse 3

I’ve got a lot to live for and each day I add on to my bucket list

I have great friends and family, there are special dates that I don’t want to miss

Sometimes I just want to cry, sometimes I wonder what its like to die

Then I think of those I’d leave behind and find my way back

Bridge

Every day’s a gift

Every day’s a steal

You can’t be the driver

Unless you take the wheel

Take the wheel

Chorus

Positivity is the frame of mind I ought to be in all the time

Everyone is nice and they want to give advice

Of a treatment they’ve heard of on the vine

Repeat Verse 1

If I could turn the tables I’d un-throw the chair that I just smashed

I’d un-rip the carpet that it tore when it flew down and crashed

Sometimes I feel that I can take no more, sometimes I derail from my track

I’ve got to get this cancer in control and find my way back.

-I’ll share a link once I’ve recorded it. It’s great to be back in writing mode and I hope I stay there. I’ve missed writing songs (other than my Pi project). I feel so much better having transferred my emotions into music.

I’ve been wanting to write songs about cancer to share, which might also help other people, be they the patients or friends and supporters. I have one other that I wrote but haven’t recorded yet, it’s more of a soul/reggae number which I wrote about losing my father in-law (also to cancer), but I thought I’d like to do a few covering different aspects.

Anyway, that’s me. Now I have to transcribe the song and publish it. If you’re still here, thanks for coming  on my journey with me.

 

Day One External Beam Radiation for Prostate Cancer


I was all geared up to start on Monday 7 December, but it turned out that they had several people starting with both chemo and radiation, whereas I’m just doing radiation, so they changed it to Thursday 3rd December. Minor problem, I was going to be in Christchurch so we met in the middle and yesterday morning I was up at 05:30 and on my way to Mercy Hospital joining the early morning peak traffic hydrating from a bottle of water I had to finish by the time I was about half way there.

When you have radiation treatment you have to have exactly the right amount of fluid in your bladder and your bowel needs to be empty. The water helps push your organs out of the way and stops them getting hit by the radiation beams. If you don’t have that right, they’ll take you off the table to drink more or have a bowel movement (one way or another) and then you have to wait while someone else goes ahead of you as they are treating around 100 cancer patients a day!

They told me this happens to everyone around 6 times during their treatment and I didn’t want that being me. This involves changing your diet, for me it means drinking a lot more water than normal (apparently I’m in good company, in that most men live their lives in a state of dehydration) and avoiding any foods that can create wind, because gas also impacts on the shape of your bowel. If anyone wants details, I can share them but the list makes it very difficult to eat at restaurants as I found in Christchurch.

So it was with a sense of trepidation that a. I would arrive at Mercy Hospital in the right bodily state and b. that I would arrive there on time.

Once I got there I was sent downstairs where I was issued with my lava lava in a nice yellow tulip colored bag, got changed and escorted to the control panel outside the radiation room and then into the room where it all happens.

Mercy ScannerThe 2 machines on the side make up the CT scanner. When I was prepped I had an MRI and a CT scan to measure the size, shape and volume of my prostate. The CT scanner in  this room is there to make sure that you are lying in exactly the same position as you were when they took the first image. That way they don’t kill healthy parts of your body. The part at the top is where the radiation beams from.

You lie on the table with your head on a little support and your knees on the blue half pipes. They prod you into place so that you line up as above and then leave the room. Like most scanning systems they have microphones and speakers so they can stay in touch with you while you are in the room.

Once they get started the CT scanner and the radiation head rotate around your body in one 360 degree circle. It felt like something out of a science fiction movie and just as I was settling in, thinking “this is interesting” it was all over, they came in and told me I was done and I could go. The whole treatment itself took about 1 1/2 minutes.

I got dressed, went to my car and drove to work for a $4 Subway breakfast sub and a coffee that I had been hanging out for (not from Subway).

Then something hit me like being knocked in the head by an out of control snowboarder in a white out. I felt overwhelmed for a couple of hours. I think it was all the underlying stress that I had been ignoring and the release that the first bout of radiation was completed, I had drunk enough, followed the diet strictly, hadn’t embarrassed myself by having to get  up off the table, all the time reading books and Doctor Google and thinking about side effects, planning for succession at work if I needed to call in sick, all the things I’m trying to get done at work before the Christmas break, a friend who had just passed away during the week, reassuring my family and more. I was in a funk.

I worked my way out of that and had a good day in the office (my colleagues have been awesome), went home and once again felt exhausted. I ended up crashing on the bed for a couple of hours after comfort eating some nuts and my mandatory Kiwi Crush (a pleasant part of my treatment diet).

Now a day later and I’m still feeling a bit tired, but much better knowing I am on my way to dealing with this cancer. I’m getting focused on the future. Things like adding to my bucket list (number one is of course beating the cancer) and looking forward to Relay for Life. My kids have started Team Early Birds. More on that later.

 

Workplace Bullying in Christchurch


Further to my blog this morning on how people are, or are not coping with stress from the aftermath of the Christchurch earthquakes, we are now hearing stories of increased workplace bullying in Christchurch. I don’t know how much it would take place normally, but this is another example of ordinary people being stretched to extraordinary limits.

According to a story published in many media this week, the stress levels are as high as would be found in a war zone. An AAP story says that scripts for sleeping pills and anti anxiety drugs are up and many people are self medicating with alcohol often resulting in violent incident, domestic and otherwise. Women’s Refuge reports a 30% increase in demand since the February earthquake.

A poll in The Press established that only 38% of people in Christchurch don’t want to leave. Of course as I mentioned in my blog yesterday on  Post Traumatic Stress in Christchurch, because of mortgage commitments, and the logical lack of buyers, many people can’t afford to leave if they wanted to.

Meanwhile Prime Minister John Key is still unable to say whether a decision will be announced this week on which streets or  suburbs will not be rebuilt.

Here’s another every day view from NZ Herald TV, brushing your teeth with lemonade because there is no water.

Coping with stress in Christchurch


Never before have we experienced a situation such as exists in Christchurch today. As was seen on Campbell Live last night people are at breaking point. Even the ambulance officers who were interviews, some of whom  had lost their own homes appeared to be close to losing it, fighting on because they are trained to, because “my uniform says I am there to help”. Men saying they “Cried last week for the first time in 20 years”.

The situation is looking incredibly serious. We have our 2nd largest city full of people suffering from Earthquake Syndrome. Interestingly it is very difficult to find information about the psychological impact from a New Zealand perspective, which I blogged about yesterday it seems as if the authorities are keeping it as quiet as possible, worried that it will get worse if people start talking about it.

In the absence of anything else, I think that is exactly what they should be doing, but more on that in my next blog. Maybe its naive of me, but today as a citizen of NZ with no mandate or authority I emailed Dr Martin Seligman of the Positive Psychology Centre at Penn University. In the US they experience repeated incidents of natural disasters in certain areas and of course with their military forces they also have extensive experience in PTSD. In NZ we really have no skills to understand or deal with repeat natural disasters and their human psychological consequences at a level like this, which in my opinion is why we are doing very little about it. We aren’t coping with the demands of repairing buildings, deciding which suburbs stay or go. We still aren’t dealing with the damage to buildings and the EQC is not paying trades people who are close to losing their businesses for trying to help people keep their homes habitable.

If you haven’t seen the Campbell Live tent recordings where they left people in a tent without any interviewers prompting them, to say how they feel, watch the following video and tell me you are not moved.